Hello new friends! I'm almost a month post diagnosis and most of that month has been spent researching, talking to docs, reading patient stories, and trying to figure out a treatment plan. In between those moments, I spend a lot of time trying to wrap my mind around this new reality ... this new, uninvited "normal".
I have 2 children and my greatest fears take over when I think about them. They are so young and I've never thought twice about missing a moment of their lives! That said, the thing that has moved me out of these moments filled with panic and anxiety is forcing myself to think positive and focus on the happiness I can draw from each moment. Truthfully, I haven't mastered this effort, but I'm determined to make it part of who I am and how I live my life.
Honestly, this disease is brutal. BUT, if you really think about it, it forces change and appreciation and positivity. My life will never be the same, but I think I might be a better mom, wife, daughter, sister, friend, because I want to give the best I have right now. I want to love as much as I possibly can!
Pre-diagnosis, of course, my intent was to be that kind of person, but life is busy and we get preoccupied with trivial things. I lived as if I had a million tomorrow's. Most people do. Realistically, no one knows how much time they have. No one! So, the silver lining of this diagnosis (and something I think gives our group an "edge" over others) is that time and life is so much more precious. I'm acutely aware of this now!
I know I might seem blindly optimistic and naive. I'm not. I know the severity of this disease and I know we are all on this forum for such a terrible reason. I've read posts filled with sadness, despair, anxiety ... but also HOPE! Those are the ones that launch me from the darkness that wants to take over.
I'm reading a book called "Mind over medicine" and it talks about the power of the mind -- our own innate ability to heal ourselves. Truly I don't think it's trickery, I think the premise is based on positive thinking and never, ever giving up! No matter what the lab results reveal or the statistics say, be hopeful and know that your mind and the way you think can impact your health. Tell yourself over and over you're getting better. Think it and try to live it. Our minds are the the ONLY things we can control.
I think you are a wonderful and amazing group of people. The way people share stories and encourage each other is so very special. I love that even though some people are in complete remission, they come back to the forum and share their story over and over again.
I'm so glad I found all of you! A huge part of my "education" is because of this forum. Thank you!
Let's be strong together. Never give up. Embrace this new normal with unbridled determination. And have HOPE, lots and lots of HOPE!
Forums
Re: Hope
Take it a day at a time, look to the future as if the disease doesn't exist and take solace in the fact that life spans are increasing as we communicate.
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Wayne K - Name: Wayne
- Who do you know with myeloma?: Myself, my sister who passed in '95
- When were you/they diagnosed?: 03/09
- Age at diagnosis: 70
Re: Hope
Lizzie!!! Now that I've stopped crying, I can reply! I couldn't have said it better. Your post totally reflects my thoughts and is worded beautifully.
We need to promise to keep in touch and share our journey as we seem to be in the same age group with kids getting ready to start treatment that will change us forever. After seeing the specialist yesterday, he made me feel as though we can keep this disease controlled until the cure is found!
Yesterday is history, the future is a mystery, today is a gift -- that's why they call it the present. Live each day to the fullest!!!
We need to promise to keep in touch and share our journey as we seem to be in the same age group with kids getting ready to start treatment that will change us forever. After seeing the specialist yesterday, he made me feel as though we can keep this disease controlled until the cure is found!
Yesterday is history, the future is a mystery, today is a gift -- that's why they call it the present. Live each day to the fullest!!!
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gardengirl - Name: gardengirl
- Who do you know with myeloma?: Me
- When were you/they diagnosed?: Nov. 2013
- Age at diagnosis: 47
Re: Hope
Dear Lizzie,
I also recently read the book Mind Over Medicine too. I received the book as a gift from a friend and to be honest, I was skeptical when I first started reading it. However, the studies the doctor referenced blew my mind. Our attitudes and beliefs can definitely have an impact on our health/outcome. I wish you the very best and please never give up HOPE.
Take care,
Elizabeth
I also recently read the book Mind Over Medicine too. I received the book as a gift from a friend and to be honest, I was skeptical when I first started reading it. However, the studies the doctor referenced blew my mind. Our attitudes and beliefs can definitely have an impact on our health/outcome. I wish you the very best and please never give up HOPE.
Take care,
Elizabeth
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elizabeth104 - Name: Elizabeth
- When were you/they diagnosed?: 25 MGUS, 28 SMM
Re: Hope
Hi! My name is Joanne. I was diagnosed with multiple myeloma the 1st time in 2003on my c4 spine. My youngest was six. I was later diagnosed with Thyroid cancer in 2005. I was devastated and scared. I looked up everything and read others people's diagnosis and that made me even more scared. All I could think of was my baby. I talked to my doctor and she said its okay to read it but don't compare their diagnosis to yours cause everyone is different. In 2007 we adopted our second daughter. A newborn. In 2008 the multiple myeloma was back in my S2 and L2. Feb.09 I had an Autogenous Stemcell transplant and have been on Revlimid ever since. I have been doing good living each day at a time and loving every minute. I finally realized the depression and the worrying is time I can never get back. God Bless you on your journey. Have faith and communicate with loved one show you feel.
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Joanne from Texas
Re: Hope
Hi Lizzie. Hope and positive thinking are so important for getting through treatment. I was in my early 50s when i was diagnosed -- a few weeks before my daughter was to be graduated from college. I was devastated, then angry, that this was happening to me. I know I was starting a new stage of my life -- but this was not not not the stage I was supposed to be in.
Getting myeloma is a slap in the head and a wake up call about what is really important to you. I have a rock with an angel carved in it on by nightstand. Every morning, I rub the angel and think positive thoughts. I am going to get see my daughter get her doctorate. I am going to see the ocean every year. I am going to see as much of the wonderful National Parks as possible. And the treatments are going to get better and better.
Hope is priceless. Positive thinking is priceless. And taking good care of yourself is priceless.
Getting myeloma is a slap in the head and a wake up call about what is really important to you. I have a rock with an angel carved in it on by nightstand. Every morning, I rub the angel and think positive thoughts. I am going to get see my daughter get her doctorate. I am going to see the ocean every year. I am going to see as much of the wonderful National Parks as possible. And the treatments are going to get better and better.
Hope is priceless. Positive thinking is priceless. And taking good care of yourself is priceless.
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darnold - Name: Dana Arnold
- Who do you know with myeloma?: self
- When were you/they diagnosed?: May 2009
- Age at diagnosis: 52
Re: Hope
I met folks that were in remission for up to 12 years when I went to a local meeting. Being newly diagnosed you feel the world has stopped. You'll later find your new normal. As mentioned, a day depressed is a day wasted. Gather up your team of caregivers and move forward with treatment. A positive attitude, a good group of caregivers, a good multiple myeloma specialist and a little good luck is all you need. And of course HOPE! Jerry
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JBarnes - Name: Jerry Barnes
- Who do you know with myeloma?: Self
- When were you/they diagnosed?: Aug 17, 2012
- Age at diagnosis: 54
Re: Hope
Hang in there young lady every hour that goes by increases the odds that they will find a way to defeat this disaster known as multiple myeloma .
In my own case I came down with multiple myeloma in 2004 and was treated for 10 months with Thalid & Dex -along with a slug of morphine (nasty stuff) -I have never had a stem cell transplant and am no longer treated with any recognised cancer drug . I have been put on 6 months visit rotation by my Oncologist ( guess he figures I'll make it at least that long) I how ever am taking several vit. in fairly large doses -mainly vit, "E" & vit. "D" which I take 2000 IU a day , I also take Resveratrol,
I drink Black Cherry juice to combat the inflammation from the arthritis left behind in my spine in the aftermath of the multiple myeloma attack - I'm 4" shorter than I was in my 20's most of which occurred in the early 2000's - All this aside My blood tests are still coming back ok -the multiple myeloma is still there but below the levels considered to be a serious problem.
Right now Kidneys are my main concern as they are border line in function.
I'm 75 years old and just recently took one of those on line tests to see how long I am going to live -Good News it says I'm going to make it to 95
(it didn't ask if I had cancer so I guess thats not a factor ???)
If you are having mobility problems there is a new product on the market -its a 3 wheel scooter made from high quality aircraft tubing that folds up to about the size of a golf bag - weighs 35 lbs -holds up to 300 lb rider - & will travel 8 to 10 miles on a charge -depending on weight of rider and topography - cost is $2500 - I have 2 of them,which both fit in the trunk of my car at the same time -
check the internet under "TRAVELSCOOT"
their main out let is located just south of Seattle Wa. (nice people to deal with) N.G.
In my own case I came down with multiple myeloma in 2004 and was treated for 10 months with Thalid & Dex -along with a slug of morphine (nasty stuff) -I have never had a stem cell transplant and am no longer treated with any recognised cancer drug . I have been put on 6 months visit rotation by my Oncologist ( guess he figures I'll make it at least that long) I how ever am taking several vit. in fairly large doses -mainly vit, "E" & vit. "D" which I take 2000 IU a day , I also take Resveratrol,
I drink Black Cherry juice to combat the inflammation from the arthritis left behind in my spine in the aftermath of the multiple myeloma attack - I'm 4" shorter than I was in my 20's most of which occurred in the early 2000's - All this aside My blood tests are still coming back ok -the multiple myeloma is still there but below the levels considered to be a serious problem.
Right now Kidneys are my main concern as they are border line in function.
I'm 75 years old and just recently took one of those on line tests to see how long I am going to live -Good News it says I'm going to make it to 95
(it didn't ask if I had cancer so I guess thats not a factor ???)
If you are having mobility problems there is a new product on the market -its a 3 wheel scooter made from high quality aircraft tubing that folds up to about the size of a golf bag - weighs 35 lbs -holds up to 300 lb rider - & will travel 8 to 10 miles on a charge -depending on weight of rider and topography - cost is $2500 - I have 2 of them,which both fit in the trunk of my car at the same time -
check the internet under "TRAVELSCOOT"
their main out let is located just south of Seattle Wa. (nice people to deal with) N.G.
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Nipon Ginko - Name: Nipon Ginko
- Who do you know with myeloma?: ME
- When were you/they diagnosed?: 2004
- Age at diagnosis: 66
Re: Hope
Hi Lizzie- I was diagnosed with multiple myeloma in 2007, and am coming up on my 7 yr anniversary. I am planning on taking the day off of work and celebrating that day. My son was 11 yrs old when I was diagnosed, my goal was to see him graduate high school, he is a freshman in college now and I plan to see him graduate from there. I have been accused of not taking my disease seriously enough. Believe me, I do. I've had two autologous stem cell transplants and have been on most of the drug regimens-currently Revlimid/dex. but at my last drs visit my dr said its time to move on to something else as my counts are moving up. As you said, it's a brutal disease. But I don't let it consume me. My children have gotten me through. I've been lucky to have support. And the good thing that did come out of this is that I have learned to embrace life. I know I probably don't have the kind of time I once thought I did. And so when a friend wants to meet for lunch or something, there are things (housework,laundry lol) that can wait. I spend more time with my children, two of whom are now adults and no longer live with me. I love visiting with them, they are my proof that I did something wonderful. And I work on building wonderful memories for them. We've taken several great vacations that in the past I would have waited to save the money for. Now I joke with my husband that he can use the life ins money to pay for them. He doesn't appreciate my humor. I wish you all the best, hold on to your hope, it sounds like you are strong enough to weather this storm.
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susanlongisland
Re: Hope
Hi Lizzie and all,
I just saw this inspiring story out on the web this morning. It is from the website of "the Hutch" out in Seattle where Dr. Libby practices. Great story about a brave lady named Laura that was cured of AML (acute myeloid leukemia) 30 years ago.
"Given the treatment options of chemo or a bone marrow transplant, she chose the transplant, believing it gave her the best shot at regaining her health. The catch was that, as her physician told her, if she wanted to have a bone marrow transplant, Fred Hutch was the only place to go. Unfortunately, that would mean leaving her son -- the little boy who was the driving factor in her quest to get better -- behind for months. “I kissed him goodbye not knowing if I would see him again,” she remembered, her eyes filling with tears.
On Thursday, Jimmy DiLella, now a father himself, joined his parents at the Hutch. “I did it all for him,” said Laura DiLella.
Hancock said that while her sister, who went on to become an oncology counselor, lives in the present, there’s not a day that goes by that she doesn’t think about what could have happened. “Laura didn’t think she would see her son grow up – and now she has a grandson.”
Since the days when Thomas pioneered bone marrow transplants at Fred Hutch, more than a million have been done around the world. Once a death sentence, some leukemias now have cure rates of up to 90 percent."
http://www.fhcrc.org/en/news/center-news/2014/02/coming-home-30-years-after-her-life-saving-bone-marrow-transplan.html
I know I owe brave patients like Laura a debt of gratitude for helping advance curative therapy for all blood cancer patients. If Laura could beat AML 30 years ago I know younger patients diagnosed with myeloma in 2014 can live to see your children grow up and live a full life like Laura has!
Mark
I just saw this inspiring story out on the web this morning. It is from the website of "the Hutch" out in Seattle where Dr. Libby practices. Great story about a brave lady named Laura that was cured of AML (acute myeloid leukemia) 30 years ago.
"Given the treatment options of chemo or a bone marrow transplant, she chose the transplant, believing it gave her the best shot at regaining her health. The catch was that, as her physician told her, if she wanted to have a bone marrow transplant, Fred Hutch was the only place to go. Unfortunately, that would mean leaving her son -- the little boy who was the driving factor in her quest to get better -- behind for months. “I kissed him goodbye not knowing if I would see him again,” she remembered, her eyes filling with tears.
On Thursday, Jimmy DiLella, now a father himself, joined his parents at the Hutch. “I did it all for him,” said Laura DiLella.
Hancock said that while her sister, who went on to become an oncology counselor, lives in the present, there’s not a day that goes by that she doesn’t think about what could have happened. “Laura didn’t think she would see her son grow up – and now she has a grandson.”
Since the days when Thomas pioneered bone marrow transplants at Fred Hutch, more than a million have been done around the world. Once a death sentence, some leukemias now have cure rates of up to 90 percent."
http://www.fhcrc.org/en/news/center-news/2014/02/coming-home-30-years-after-her-life-saving-bone-marrow-transplan.html
I know I owe brave patients like Laura a debt of gratitude for helping advance curative therapy for all blood cancer patients. If Laura could beat AML 30 years ago I know younger patients diagnosed with myeloma in 2014 can live to see your children grow up and live a full life like Laura has!
Mark
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Mark
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